The interests of patients must come first in any decisions on which medicines should remain in or be added to the healthcare package, the health insurance council CVZ said on Monday.

The comment comes after last year’s advice from the CVZ that payments for expensive medicines for the rare metabolic disorders Pompe and Fabry should be scrapped.

The CVZ told health minister Edith Schippers at the time that scientific research showed although the treatment does have an effect, the cost was too high in comparison with the results.

Research

‘We will no longer wait until the scientific research is complete,’ CVZ chairman Arnold Moerkamp told the Telegraaf. ‘From now on, we will also look at the impact on patients of scrapping payments during the research phase.’

Last year, Moerkamp attended a meeting about the Pompe and Fabry medicines and was confronted by patients. ‘When you see all those people sitting in the hall, in wheelchairs or with breathing apparatus, you realise a scientific approach is not enough basis for a decision,’ he told the paper.

Impact

Moerkamp said the CVZ had underestimated the impact of its decision on Pompe and Fabry patients. ‘In the past, the request to admit a particular medicine to the basic healthcare package usually received a positive response. But the economic situation has changed things,’ he said.

Medicine for Pompe and Fabry disorders is currently being paid for out of a separate fund and not basic insurance. The health minister is negotiating with manufacturers to have the cost of this kind of medicine lowered.